“Once more unto the breach…”

In many states once you get outside of the city areas the highways have poetic names like “Highway M” or, “Highway Z” or, “Highway PP.”

Every time Kathleen and I drive through Wisconsin we pass a sign that reads, “Hwy V”  I have yet to be on top of my passenger duties enough to snap a photo of the sign, but it always makes me smile and imagine that it’s pronounced, “Highway The Fifth” and can almost hear, “Once more under the bridge, dear friends…” in my head.

So yesterday I reentered the world of Chemo, this time for the third time, and the day was rough.  The chemo itself wasn’t TOO rough, it’s never terrible while I’m getting it.  It takes about a week for the effects to kick in.  But the start of this round are a few out-patient treatments, which I like better than staying in the hospital.

The main reason I like to be out of the hospital is that it’s always a crap shoot what kind of nurse one will get, and so far my odds are running 5-1 “excellent nurse, very helpful” vs “nurse who can’t be bothered, not great.”  The type of nurse that’s assigned directly affects the quality of care, kindness means SO MUCH and when it’s missing from the nursing equation, it can be a bit hellish.

Of course I’d rather have an efficient nurse than a sweet-but-clueless nurse (I’ve SELDOM had the latter, for what it’s worth) but overall I’d prefer an efficient and KIND nurse.

So yesterday, my day started with a Lumbar Puncture (and we know how I love those…)

I checked the online portal and was surprised to see my in-time had been changed to 9:15 from 9:30, so I rushed Andy along and we made it, but just a bit late.

Upon check in, though, we were told that the appt had been cancelled.  I’ve become used to Health East cancelling my appts on a dime, usually after an extended fasting period (this happened TWICE last week) but I was pretty frustrated.  The admin who checked us in was also flummoxed, she knows me and remembered my name and was surprised to see my appt had disappeared.

She asked us to wait to the side while she got a nurse to explain the situation, so we sat for about 20-30 minutes.  Finally a nurse came out and did the nurse-walk think I really hate (where they walk really fast but I can’t keep up because I’m on walker and in pain…)  As we entered the dressing area he turned to us and said, rather curtly, “You should have been here an hour ago, you know…”

And and I were NOT having it.  We kid of tag-teamed him, “No, we weren’t – until an hour ago the online portal said we should be here at 9:30!”  He was not having it, he insisted that it was folks like us who were late who held up everyone for the rest of the day.  We asked for a different nurse.

The new nurse was lovely, but she couldn’t access my port for love or money.  My port has been a problem since it was put in, and I always prepare myself for a decent amount of pain as they try to get the needle to work into the diaphragm of the port.  Even with the cream it’s very painful.

So as time ticked away, and they had to take person after person ahead of me, it became clear that this wasn’t working.  They sent me up to the chemo beds and the nurse in the chemo area had been able to access the port, although it took a bit of fiddling with a type of blood thinner to actually get my ‘blood draw’ to come through correctly.  I received my several hours of different chemo drugs.  By this point I was starving, but no food was allowed as the lumbar puncture’d been rescheduled for 3:30.

Back down to Interventional Radiology, this time I was the only patient in the area and was taken in pretty quickly.  I explained about the pain the last time I had the procedure and several of the nurses had been at previous non-painful punctures with me, so that was a help.  We made sure that a decent amount of time had passed between starting the pain meds and the actual puncture, which was enough to make it practically pain free.

Such a long, intense and confusing day is almost harder for Andy than it is for me.

Andy hates to wait in the hospital for hours, so generally after I’m settled in someplace they’ll bug out and run home to check on Gerry, take the dog for a walk, and come back in time to see me settled into my next appointment.  Sometimes this works great, but sometimes this can lead to a bit of a traffic nightmare with Andy finding themselves between locations when I need them near me for some information stuff, or with it just taking longer to get from point A to B than Andy expected.

So as frustrated and exhausted (and hungry) as I was at the end of my day, Andy was almost MORE frustrated.  Thankfully they had brought me some food, so when the only think I really felt like I could eat from the menu (red jello) wasn’t available, Andy had an alternative for me and it was DELICIOUS.  But we had a rough ride home.

These long, long, hungry and painful days are not fun for ANYONE.  Maybe we should’ve taken “Highway The Fifth.”

The Pain Drain

One thing about this whole cancer adventure is that I can’t really know what to expect on any given day.

It’s a huge mystery, and it seems that there are as ways a cancer journey can unfold as there are folks who’ve had cancer.

I had THOUGHT that once we got my pain settled with the 3x Oxycontin + as needed OxyCodone, I would be good to go.  And that worked for a few weeks.

But apparently because the tumor in my spine had metastasized again into my hips and tailbone, and it brings a whole NEW tenderness and sensitivity.  I wouldn’t have chalked it down as actual “pain” until today, when the sensation definitely grew into a pain situation.

My morning adventure was getting X-rays at St. Joseph’s hospital, then seeing my neurologist to discuss the X-rays, and then a drive over to St. John’s Cancer Center for a refill of my chemo pump medications and home for resting.

Unfortunately, St. Joseph’s is one of those old-type hospitals in a downtown area that is actually a series of buildings that have been cobbled together into one unit.  This means that there are very few DIRECT ways to get from one department to the next, so my walk from the entrance to Radiology, and then another walk to the Neurology dept were BOTH extremely long (involving several elevator rides and lots of walking)

And this caused me extreme pain.  It wasn’t the walk as much as it was the big brace I had to wear, which pushes down on my hips in a MOST uncomfortable way, and causes me to sweat like a Swede in a sauna.

Seriously, you could have WRUNG OUT the T-shirt I was wearing under the brace,
and heat causes my skin to bleed (I’m a redheaded weirdo)
and THAT causes a great deal of pain.

It was so bad that I got a special dispensation to only wear the brace for comfort reasons. I’ve been pretty good about wearing it whenever I travel in a car, or when I’m walking around outside, but with the advent of the hip pain I must admit I’ve been leaving it off as much as I’ve been wearing it.

I feel very fortunate that my neurologist is taking the fact that the brace is CAUSING me pain seriously.

But it’s been hard to climb out of the hole of pain in my hips that I slunk into this morning.  I know that after I’m able to get a decent night’s sleep the pain will begin to resolve itself, but right now it’s a cold, hollow pain that fills both hips, it’s probably time for a lidocaine patch, to be honest.

Pain is such a game changer.  It feels good to discuss it, but I also know how boring it must be to open my blog and read, “Pain, blah, blah, blah, PAIN!” But that’s my reality today.  Which is so weird after a few weeks of very decent pain control.

It also makes me wonder if the chemo pump drugs I’m on are having
some kind of effect on my pain meds, perhaps undercutting them in some way..?

Tomorrow I meet again with my Radiational Oncologist to discuss returning for MORE radiation treatments to deal with this pain, and to deal with the metastasis of the spine tumor.  This whole thing sounds so danged scary, but each and every nurse and doc and health professional I deal with has been NOTHING but hopeful that all of this is just part of my own, personal cancer journey.

I appreciate their hope, it gives me a lift, and makes my days a bit easier.  My nights, however, continue to be honeycombed with pools of pain and fear.

On a personal/work level, I am feeling terrible that I’ve not been able to swim above this pain to get more done on the website.  It’s like I can’t 100% focus on anything but — well — pain.  That’s what pain is, I guess, a big, fat element of life that steals all the focus from everything else.

And, by comparison, the pain I’m feeling is actually much LESS than the pain I was feeling for most of the Spring/Early Summer.  It’s just that now that it’s attached to the word “Cancer” it’s as if the pain has a deeper color, a scarier hue, and it can be alarming.

D Day

I’ll Be Taking The Walking Path For The Time Being!

The diagnosis of my cancer was PDQ (pretty damn quick), coming immediately after they’d finished my MRI on July 23rd.  At the time I was a bit nonplussed when the ER doc, after one test, made a pretty conclusive initial diagnosis; “Well, you DON’T have Fibromyalgia, you’ve got CANCER.”

After a bit of discussion I understood what me meant was that there were THREE pretty sizable sites of metastasis (spine, back of the neck and lymph nodes) which was as much of a guarantee that I had cancer as anything else they could have seen.  The mystery at that point was, what exactly was the PRIMARY cause of the cancer.

The days between the initial MRI, the lymph node biopsy and the point when the pathology was ready to be addressed were LONG ones.  Only 5 days, but it felt like 5 months, and it weighed very heavily on my psyche.  Those were 5 days of pure fear.

Dexamethasone: All the sweats, hot flashes, puffiness and irascibility of Menopause, now in a convenient PILL!

When my Medical Oncologist, Dr. N, sat us down and told us that I had Stage 4 Diffuse B-Cell Lymphoma, our reaction was SO positive I think it surprised him.  My big fear was that I’d had a large, solid mass tumor somewhere; colon, liver, some terrible place.  And THAT would have been a very difficult diagnosis to process.

But I was extremely lucky.  Lymphoma is a cancer where the word “cure” is actually used.  Yes, I am VERY lucky!

TODAY is another D-Day, at least for me it is.  Today is the day we look at the results of all those tests I’ve been taking this past week, most especially the bone marrow biopsy and lumbar puncture, to see if the cancer has moved into my spinal cord.  I think it’s about as scary as it sounds.

I asked demanded that I have my two more painful tests under anesthesia, and more than ever I’m convinced it was a very good call.  The residual pain I feel in my back and hips from these tests is pretty extreme this week, I would hazard to say that the pain these last few days has been as bad as it was at the start of this adventure in mid-July, which is pretty bad.  The main difference is that this time I have several pain meds I can use to break through this pain, and that’s a mercy.

Dealer’s Choice
So today I have my “long visit” with Dr. N,  where we’ll go over the test results and discuss what may be the next step in this trip.  With absolutely no medical experience or education of any type, my only point of reference is having been Gerry’s caregiver for so many years.

Topical pain relief from Galina!

But the truth is, Gerry is the ‘researcher’ in the family; he goes into his head, he reads stuff, he deals with numbers and percentages, THAT’s his comfort zone.

I’m not dividing my observations into a male/female way of dealing with pain and new medical information, because I know many women who are very numbers oriented (me, for one!) and I know MANY men who approach things in a more “feeling” way.

But in the case of Gerry and myself, I tend to be the “emotions whisperer” with the kids, Gerry tends to put the numbers into some type of structure that we can use to understand them better.

For this reason, when Gerry gets scared, or shows his emotions, it hits me very hard.  I’ve been scared this week, no specific reason, just overall FEAR.  Gerry admitted to me last night that HE is hella scared, too.  His fear paralyzes me, but I never want him NOT to tell me he’s afraid; he keeps SO much stuff bottled up inside as it is, I’m HAPPY that he shares his fears with me, too!

Emotional pain relief from Galina!

Good teams, like our family, will always find a way to regroup and work together, changing roles as each of us changes our outlook or understanding of the disease.  I am DEFINITELY feeling the need for some therapy, though. HealthEast Cancer Care at St. John’s only seems to have ONE Oncology Psychotherapist, and we have an appt for next week.  Apparently she’s exceptional, well loved, and — it being August — has been on vacation.

Note to self: NEVER get cancer in August again if you want to see your care team together in the same week…

I’ve been mentally preparing for The Worst News Scenario, and alternatively preparing for The Best News Scenario.  It’s really all one can do at this point.  Having spent a life in the theater, mostly working backstage, I love the feeling of an audience receiving all the parts of a theatrical production in the “order” that the director, designers and actors choose to present it.  Seeing exposition (back story) presented cleverly and well is a hallmark of exceptional theater.

Rx Pain Relief from the Docs

In terms of my cancer, ALL of the exposition rests in the hands of Doc N, who will reveal precisely what HE understands is happening inside of me later this morning.  In 4-1/2 hours, to be precise.  Which Gerry will want to be.

News when I have it!  Love always!